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Desperate and hopeless - Carers UK Forum

Desperate and hopeless

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Hi, Im new here,and unfortunately I have become so desperate and hopeless that Im lost as to what I should do. My 19yr old daughter has had a physical condition for over 9 yrs which doctors are unable to diagnose, this is steadily getting worse,she has good days where she can function and bad days that shes unable to get out of bed. She has chronic internal ulcers and external ulcers over her body severe stomach, chest and joint pain. Morphine has been given so I can administer it at home. Along with this she has severe depression,anxiety,panic attacks etc. She was kicked out of school because her attendance was low even though she was in hospital! Her mental health care has been transferred to the Adult Team and they are absolutely useless. She has been neglected in her care of duty by them as they refuse to take on board her previous doctors mental health prognosis even though he had treated her for 4 yrs! She is vulnerable and volatile and has tried committing suicide twice in 6 months. Obviously she cant be left alone and now my place of work are insisting I change my hours even though they know about the situation. I don't have anymore fight left in me, who do I now battle with? I'm sooo exhausted. I have quoted carers policy,carers act etc and it falls on deaf ears and this is a huge corporate company in the uk. How do i get the right care for her and do I leave work because I can't change my hours. This is extra stress that I'm struggling to cope with. I did contact talking therapies for myself, had the assessment and was told that "i have too much going on and things need to settle before they cn help me". My doctor wants to prescribe anti depressants but that's not what I need. Currently she goes to a work experience place when I'm at work and in between work we spend so much time at various other hospitals trying to manage her physical conditions. I simply need to be allowed to take a breath and somehow get her seen by a psychiatrist but its now been 9 months with this battle and I'm lost as I cant achieve this. Any advice would be great.
Hello Sara and welcome.
My, no wonder you are exhausted. This is just a quick post to say Hi and fill in until others more knowledgable than i am come along.

Firstly re work Acas has much information and a helpline. http://www.acas.org.uk/index.aspx?articleid=1461
I assume if your work has a union, you have contacted it?
It maybe that work could be sued for constructive dismissal but suing is another stressful, long drawn out situation. You may want to contact an employment lawyer who may well help you negotiate a leaving package rather than sue, if you decide to leave, but I am sure there are many on here who would advise you to stay working, both for your well-being as much as the money.
If you are thinking of leaving do check out the benefits situation, and again another forumite will be along with links shortly.

I don't have anything to offer 're getting help for your daughter. My son started exhibiting mh and anxiety issues at 22 and so far we have kept him out if the system as they dont want to know as he isn't a physical danger to other or himself (other than total withdrawal which they don't consider a problem!)

For yourself it maybe that a mild dose of antidepressents just helps take the edge off anxiety so you can think more clearly. We all need a little support sometimes. It's important you look after yourself physically and mentally so you can continue to fight for and to support your daughter.

You'll find much advise on here, it will probably flood in over a few days so meanwhile check out the relevant sections and threads in the Specific Disabilities section lower down on the forum homepage.

I'll Also introduce you to our online hugs as I think you need one :)
Hello Sara and welcome to the forum.

I'm sorry that personally I can't give you any advice - my experience is with caring for an elderly parent with dementia - but I'm sure that some of our members caring for adult children with MH issues will be along soon to welcome you and perhaps be able to offer you some relevant advice.

I'm presuming that your daughter's physical problems are the main source of her MH issues - it's understandable that anyone with such a painful un-diagnosed condition would suffer with depression and anxiety so it's to her credit that she manages to hold onto her work experience place.

With reference to accessing MH care, have you looked at the MIND website ? Maybe they can suggest something that you haven't yet tried ?

Regarding your working hours - do you belong to a union ? Or perhaps ACAS might be able to put you on the right track ? I know that other members have had similar problems in the past and been able to resolve them with help from their union representative.

Has your daughter had a Needs Assessment from Social Services and have you had a Carers Assessment - both are designed to determine what help/support you both need for you to continue Caring - you can find more information on both by going to the "Help & Advice" tab in the red banner at the top of the page.
Hello Sara.
My situation is my husband has vascular dementia suffered strokes,so unfortunately I am unable to advise you.
Others will be able to shortly, I'm certain.
The forum is a good place to vent.
Welcome to the forum and I will join Mrs A in sending you a (((hug))
Hi Sara

It sounds like you are having a rotten time.

I would second the advice about a trade union. If there is representation at your workplace and you haven't already joined it is not too late to do so - you are usually covered from the time you sign up. The membership subs aren't that much as it is done on a sliding scale. I've had friends who have worked as reps in the past and know they can be brilliant in helping to resolve problems like this.

I have two part-time jobs. I had an awful lot going on at home towards the end of last year and so opted take unpaid leave from one job (basically I was running out of leave). I know this isn't an option for everyone due to money and it sounds like your issue is ongoing. You could do with your employer being more amenable.
I can well, well understand how worried and stressed you are (and your poor daughter too).

You say the doctors have failed so far to come up with a diagnosis. And this has been going on for nine years!

I do think that perhaps your priority is to press for a diagnosis via yet further investigations, yet further referrals. SOMEWHERE in the country (or even further afield - see my point below!) there MUST be a dermatologist or whatever field this comes under who can finally work out what out what is going on here! (and actually, precislye what field it comes under may be up for dispute as well!) (for example, a quick trawl by me of wiki about ulcers has already thrown up -as well as horrible photos of an ulcerated back and if your poor daughter has anything like this I can well understand her misery! - various possible causes and associations from diabetes to circulatory disorders (eg, problems with the valves in blood vessels).

Have you kept a medical log for your daughter over the years, with a list of who she has been seen by? If not, can you reconstruct one (yes, this SHOULD all be on her medical notes, but it's a good idea to log it yourself as well!).

Who are the consultants she's been seen by, and when, and what are they saying? If you can have a 'starting point' so to speak, you can use that as a base to go on from. For example, if she's been seen by Dr A, at a particular hospitcal, then you could look up and see what papers Dr A has written on the subject, and in what journals, then you can look up further specialists, including, and this may be the way forward in the end, doctors in other countries ,especially the USA. If she sees one hospital consultant who is perplexed, press them for who else in this field she could see - the doctors get really, really specialised, and somewhere in the UK are doctors who do specialise in your daughter's condition.

Always remember, if someone has a rare condition, it's great to find the doctors who are doing active research in it, as they love to find guinea pigs! Their own research interests can be of direct benefit to a patient, as they get lots of attention (finally!).

Skin disorders are notoriously hard to treat effectively, they tend to be 'systemic' - for example, are your daughter's ulcers related to, say, an impaired immune system (I've spotted, in passing, a potential link between ulceration and IBS - again, an immune system problem sometimes!).

Finally, in terms of diagnosis, if you haven't done this already, please do trawl US health websites and forums! The USA has a vast population, and conditions that are very rare in the UK, can be far more common in the USA, and you may find out far more information there. (I discovered this when my hustband had a relatively rare cancer - the US cancer forums had far more people on them!).

Then, of course, there's the matter of finding an effective treatment! Again, the USA may 'lead the way' here which is why it's always good to know what is going on medically over there, and then that can put pressure on UK doctors to try out new treatments.

Many apologies if you are already doing all of the above, and are still hitting a brick wall. It's SO frustrating, because surely your poor daughter can't be expected simply to put up and shut up about this debilitating condition for the rest of her life??

Wishing you both as well as can be, and hope things can get to a bit of a breakthrough for her soon, kind regards, Jenny
More {{{hugs}}} but no answers or solutions.
Getting a diagnosis can be very hard with some rare conditions: and some conditions have yet to be labelled.
Sometimes, having a label is not much help anyway.
Social workers are not very label-obsessed, but doctors are.
My son has at least four labels: two of which are new this year, but they are not him: and he isn't the labels. He is Jordan. He likes ski-ing, sailing, football, music, movies, climbing mountains, and has traveled the world.
We all take it day by day: frankly, what is the alternative?
Hi Sara
So sorry to hear what you and your daughter are going through. It is bad enough dealing with a physical problem but when it is also MH it gets more worrying. I have a daughter who has MS but also seems to now display behavioualr issues maybe due to depression so I really feel for you.

Has any doctor ever mentioned a disease called Behcets ? I only ask because the daughter of someone I know in the States has very similar sounding symptoms and it has taken ages before it was diagnosed. I believe she is now getting the correct treatment and is so much better. Dont loose hope, keep on pestering your GP to refer you to another hospital.

Best of luck and do hope you get answers for your daughter very soon.

Hi All, Firstly I would like to thank you for all the support and love that you have shown me I truly appreciate it.
I have been in touch with the union and Acas and as business needs are quoted and its up to the companies discretion to evaluate the individual, however it can not be forced. Yes it is constructive dismissal. Tbh this is a battle that I simply don't have the energy for. I am a single parent and work part time in order to care for my daughter. I do not claim any benefits so for me, it is important to keep my job,but not at the cost of neglecting my daughter.
I have done so much research into various conditions over the years and I find that I am seeing various consultants which suggestions. Behcets syndrome along with other conditions has previously been discounted.Even though I feel that she does tick alot of the boxes.She has had every possible test through the nhs and I even took her privately and still no answer.I have tried every alternative treatment you can think of. I'm no loner concerned in a clinical diagnosis I just want someone to help her. At the end of this month one of her consultants wants to start her on meds that suppress her immune system. That in its self is another minefield. The real struggle is getting the local MH team to take her previous psychiatrists diagnosis of multiple personality disorder and the fact that she is volatile and vulnerable. In a recent meeting I was quoted budgets and funding also they disbelieve her previous MH diagnosis. If she had the correct care this summer with meds,counselling etc I am certain she would not have overdosed this summer. Even now they are refusing to give her the correct care. I have very clearly stated that they have failed her, but again it falling on deaf ears. The crisis team say that because she never spoke about killing herself she is not 'red alert', yet she will get into a dark place and just do it. I am helpless when she sobs saying her head is not right and begs for me to help her. Thank you for letting me vent.Love to all